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Unseen Gap in Health Care Access

Kamil Fulwood Spagnoli

Kamil Fulwood Spagnoli

This post is written by Kamil Fulwood Spagnoli, a new Graduate Fellow at the Center for Health, Media & Policy. Ms. Fullwood Spagnoli is working towards her MS degree in Health Communications at Boston University. She plans to focus her health communication work on people living with disabilities and maternal child health.  Her full bio is here.

Unseen Gap in Health Care Access

Over the past decade, there has been debate over how to provide increased access to health care. We all heard the fanfare about the Affordable Care Act and the national conversation that explored its benefits and shortcomings. This law has made it easier for people with preexisting conditions to receive coverage and has allowed Americans to purchase insurance through federal and state exchanges. 

The intent of the Affordable Care Act was to move toward universal access but the disabled still face being excluded from the health care system. There was much vitriol and acrimony during the debate about health care reform. Opponents of the proposed changes countered each proposal with arguments why the reforms would be destructive. In other words, there was a robust discussion. 

Exclusion of the disabled was never among the opponents’ counter arguments. 

How the Disabled’s Access to Health Care is Dwindling

According to the US Census Bureau, 1 in 5 Americans has some form of a disability. In the 2012 National Health Interview Survey, 20.6 million Americans were identified as having vision loss. The survey also found that the visually impaired have access to technology at an alarmingly low rate.  Over 1.5 million people, 15 years of age and older with limitation in seeing, reported having access to the Internet. Almost 1 million said they use a computer regularly. Of those, about 196,000 people have a severe limitation in seeing and have access to the Internet. 

Unintended Effects of Efficiency 

Increasingly, health care is following the trend toward exclusive access through technology−from using electronic health records to scheduling appointments over the Internet. What these statistics show us is that as the industry adapts to business models that rely on the Internet to manage and deliver health care, the visually impaired may be excluded from readily available information about their illness, symptoms and treatment options and health prevention. 

A growing number of health care organizations are scheduling appointments, managing patient records, prescriptions, and disseminating health information through online platforms that are not required to be accessible to visually impaired patients. 

Accessibility Enforcement

For those blind patients lucky enough to have assistive technology, there is no mandate to make health sites compatible to disabled patients.

The World Wide Web Consortium (W3C) is an international community that is committed to making access to the web available to everyone. W3C’s Web Accessibility Initiative provides strategies, guidelines and resources on how to make the web accessible to people with disabilities.  For non-governmental website developers these standards are voluntary and therefore not enforceable.

That’s why when a visually impaired person purchases a computer with assistive technology and she clicks on one of those websites it’s not compatible with their screen reader and magnifier and not accessible.

Non-disabled people have direct access to these same websites. They are at an advantage and can access comprehensive health care information and services, financial services, educational platforms and social networks.

The disparity that this problem creates is the huge gap between those who can see and those who cannot in regard to managing the basic tasks of everyday life.

Social and Economic Marginalization Carries On

It can be argued that the isolation experienced by the blind and visually impaired is more entrenched than racial segregation.  There has never been a high profile movement to demand solutions to the poverty and discrimination that people living with a disability experience daily. 

Large numbers of the disabled live at or near the poverty line and can’t afford the available assistive technology. Computer systems that include screen readers, can cost upwards of $10,000.  Not all visually impaired individuals are eligible to receive purchasing assistance from state vocational rehabilitation departments.  

Increasing internet-based access to the most fundamental services would certainly facilitate a demographic shift, economically, educationally and potentially impacting health outcomes.  

Making the Internet Accessible

One solution might be to offer tax credits as an incentive  to tech manufactures to integrate assistive technology into off the shelf computer systems. This incentive would increase access to technology for the visually impaired.

As a society, we may be forced to address the disparities created by  a failure to ensure access to online services because of the increasing prevalence of disabilities attributed to the aging population in the United States. The question is how do we successfully design health care strategies that are accessibly to all, not just the advantaged?

 

What Would #ThisNurse Say? Nurse Pham: You’re a Hero. Media: More Nursing, Less Puppy Love.

This post is by CHMP’s graduate fellow, Amanda Anderson, RN. Amanda is a practicing bedside nurse in Manhattan, and a student in the Hunter-Bellevue School of Nursing‘s dual MSN/MPA program with Baruch College. At HBSON, she co-directs The Nurses Writing Project, a nurse-specific writing program that uses peer-based collaborative writing assistance and reflective writing practices to grow nurse leadership via the written word. She blogs here, and for a number of other nursing sites. Find her clips via her blog, This Nurse Wonders. She tweets @12hourRNcalllightI think it’s safe to say that most of us can detect when the media is spinning a story. Whether telling or being told, news is often flung wildly across print, television and social media at the whim of the deliverer. We all know the power the media has to shape the way we think, just as much as we all know what to expect when we turn on Fox News.

But since we’re rarely included in the media, nurses may not realize that this week, we became its biggest victim. Our poster child? America’s first recipient of transmitted Ebola, Nurse Nina Pham of Texas Health Presbyterian Hospital in Dallas.

On Tuesday, likely to quell the anger of nurses over the CDC’s wording on the cause of Pham’s diagnosis, the Times ran the story, “Ebola Puts Nina Pham, a Nurse Unaccustomed to the Spotlight, in Its Glare” Written by Jack Healy, the story came nicely packaged with a photo of the young, beautiful woman on her cell phone, assurances of Nurse Pham’s stable state of rest, that she checks her charts twice, and that her little dog is safe.

To pick one story on this evolving topic is difficult. But I believe a quick dissection of the Times initial coverage of Nurse Pham is most vital to the nursing community in our current state of Ebola dialogue. With it, the media has stuck us in the age-old angel corner, and in doing so, largely distracted us from spinning our own evidence-based, intelligent tale.

Here’s where I think we, the expert nursing community, went missing in this piece, and what we might have added by way of a credible, clear and constructive defense to Nurse Pham, and an attempt to gain control of the dialogue about nursing in the shadow of Ebola.

Nurse Pham is a professional.

The Times cited a friend of Pham’s, a Jennifer Joseph, titling her simply as a former colleague. Joseph later outs herself as a nurse, saying that Pham helped her orient to the ICU. She also speaks on Pham’s character, which is the only instance when the Times spins Pham’s breach – she’s a conscientious, nice nurse, how could have…made a human error?

Not once does the Times speak of Pham’s experience as a nurse. They disclose that she graduated from an accelerated degree program, but they do not tell the public what this means – that this is the equivalent of a Bachelor’s degree. No quantification of her experience as an ICU nurse is made.

How different the spin of this article would have been if the reporter included the remarks and expertise of an experienced nurse to address Pham’s ICU experience, professionalism, and the role that the hospital played – or did not play – in preparing their nursing staff. This missed media opportunity likely did little but distract a public already entering mid-panic over the competency and protection of its most trusted profession.

Whether Pham has little ICU experience, or she is a nationally recognized critical care specialist, a discussion of her professionalism as a nurse by a nurse, remains an opportunity too valuable to miss. Without our voices, the Times spins us into the numb land of human interest – beautiful, young, saintly nurse turned patient – and away from a much-needed dialogue on what makes a nurse credibile, and what a credible nurse actually does at the bedside.

Nurse Pham is a victim of poor training.

As an experienced MICU nurse who cared for critically ill patients during the deadly 2008 H1N1 epidemic, my first question about Nurse Pham would have been: “What was the protocol that she breached, and how did her hospital prepare her?” Instead, this article had me wondering what might happen to her dog. By focusing on personal attributes, the media created a cause, but with it, a distraction. Now, days and diagnoses later, the truth of the hospital’s state of unpreparedness has finally surfaced via the voice of an angry nurse employee.

Whose fault is this initial soft spin? In my opinion, the nursing profession should shoulder part of the blame. Barring a very outspoken nursing union and a lot of social media drivel, many of us are not asking critical questions to critical media contributors. What exactly happened in that Texas hospital? Did the journalist reach out to Texas Health Presbyterian Hospital in Dallas and ask to speak to an expert infectious control nurse or nurse epidemiologist? Are these nurse experts reaching out to the media to pitch themselves as experts?

Likely, the question we all want an answer to – “What went wrong?” – will not be subject to conjecture for quite some time. Our outside perspective but inside nursing knowledge is direly needed to spin nursing’s take. By asking about the nature of Pham’s training and her employer’s lack of preparedness, expert nurse voice could act as the vehicle for shifting the Ebola debate towards the discussion of a systems-level problem of neglect towards nurses, that existed long before the virus entered our land.

Nurse Pham should be our example, not our media darling.

While my thoughts go out to Nurse Pham, who is undergoing what I can only define as every nurse’s nightmare, I think we do ourselves a disservice as a profession to jump into the human spin of her story. As American Academy of Nursing president, Diana Mason aptly said to NPR this week, “If your hospital’s not prepared for Ebola, the nurses will know it.” When we focus on fluff, and do not speak critically with the media on the details of our care, we keep vital, nurse-specific observation points from policy makers.

Want the CDC to change their PPE protocol? Stop threatening to strike for specific items and instead study their recommendations on PPE procedure. Look at pictures of Ebola in Africa; recognize its theft of humanity, and that it is a threat to many more lives than just our own.

Then, talk to your media outlets and spin nursing’s story in ways that count. Talk about your experiences with PPE training, now and in the past. Call in to your local radio station about the quality of your PPE at work and what it feels like to wear it – in an unbiased, factual manner. When you see a CDC policy that makes you scratch your head, refrain from tweeting it with a thoughtless comment, and look into it. Could you explain it better?

Ebola is nursing’s tracer-test – it exposes just how unsupported, and yet just how crucial we really are to America’s health. We should move away from blanket statements based in fear and not fact. Using Nurse Pham as our example, we must make ourselves available to the media as the experts that we are, demanding the policies necessary for vigilant Ebola care, while offering our expertise for their creation.

New Thursday Column: What Would #ThisNurse Say?

This post is by CHMP’s graduate fellow, Amanda Anderson, RN. Amanda is a practicing bedside nurse in Manhattan, and a student in the Hunter-Bellevue School of Nursing‘s dual MSN/MPA program with Baruch College. At HBSON, she co-directs The Nurses Writing Project, a nurse-specific writing program that uses peer-based collaborative writing assistance and reflective writing practices to grow nurse leadership via the written word. She blogs here, and for a number of other nursing sites. Find her clips via her blog, This Nurse Wonders. She tweets @12hourRN

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I love the New York Times, I really do. Above the shower in my tiny, windowless bathroom, hangs a clipped front page from March 17, 2004. A woman walks in front of a bodega’s flower display as snowflakes fall. She holds a cell phone, and like a true New Yorker, goes unphased by the flowers, the snow, and their ironically beautiful combination. I loved this photo then, when I was in college in rural Ohio – it was the personification of a city I knew I was destined for. I love it now, as I walk the same streets and continue to read the same paper.

But the longer I read, the more I realize that my beloved Times really doesn’t love me back. Sure, it loves me, the student, the reader, the art lover, and the citizen. But my New York Times doesn’t love me, the nurse. Day after day, I open to stories about topics that lead directly into the world of nursing – health care policy, Ebola coverage, even business innovations –with word after word, and quote after quote blatantly devoid of the opinions of our country’s largest and most trusted profession.

An article in today’s NYT discusses Ebola preparedness in New York City hospitals. Although “nurse,” and “the nurses,” are used in descriptions of personal protective equipment (PPE) upgrades, nurse opinion is not cited. An opportunity for public education on the risks of transmission is missed (arrow) – a perfect place for an experienced nurse to explain the process of donning, wearing, and removing PPE. The only nurse quoted in the article remains unnamed, described as, ” not authorized,” for identified comment, despite assumed position as a hospital employee.

I’ve written a few reflections about this absence on my own blog, and for HealthCetera. Many center around the seminal book, From Silence to Voice, where authors Bernice Buresh and Suzanne Gordon discuss the absence of nursing voice in mainstream media, and why this is a problem in dire need of a solution.

I believe our absence in papers like the Times says much more than any misquote or unauthorized sound bite we might fear – our silence infers that we, the nursing profession, has nothing to say. But from my experience at the bedside and in the policy world, I know this isn’t true; nurses have more to say that matters than most partners in health care teams. Maybe we just don’t realize this?

So, from now until I start seeing active solicitation of expert nurse opinion in my daily paper, I’ll write a column here on HealthCetera. This column, called, “What Would #ThisNurse Say?” will take one news article each week, and discuss the absence of nursing voice within its contents. It will then shed light onto what the article might look like with the presence of nursing voice. I’ll also give you tips on how to reach out to your local papers as a nurse expert, who to talk to at work to get your expert-quotes approved, and where to go when you want the inside-scoop on news from a nursing perspective.

Nursing is big, but we’re often ignored. We’re vital, but we’re always fighting replacement. Perhaps it’s time to enter into the media arena as the experts we are in the bedside arena – one newspaper quote after another. Join me every Thursday, here on HealthCetera, to do just that.

Healthstyles Special

WBAIWe are excited to tell you about a special program we’ve put together for Healthstyles tomorrow, Thursday, October 9th, from 1:00 to 3:00 on WBAI, 99.5 FM  in NYC (wbai.org). It’s part of the station’s fundraising marathon, and we hope you’ll tune in and make a donation during our time slot by calling 212-209-2950.

We lead off with a discussion about the Affordable Care Act–what’s working, what’s not, and what can help to improve health care in the state and nation. NY State Assemblyman and Chair of the Assembly Health Committee, Richard Gottfried, joins us for that discussion and talks about a bill he has sponsored to adopt a single-payer approach in the state.

Barbara then interviews political cartoonist Jen Sorensen about  health care reform. She talks about a cartoon about health care reform that we’ll be offering as a premium to listeners who make a qualifying donation to WBAI during the program.

You can listen to the interview JenSorensen

**Finally, we’ll end with Barbara’s interview with founder and CEO of Hip Hop Saves Lives, Chad Harper, about his advocacy, education and work with youth to promote an understanding of and activism around some of the important health and social issue of our day.

**(due to scheduling issues, this interview did not air live) You can listen to the interview with Chad Harper HIPHOPSAVES.

So it will be a lively and rich program with diverse voices. Tune in and support Healthstyles tomorrow from 1:00 to 3:00, on WBAI, 99.5 FM in New York City.

Diana Mason and Barbara Glickstein, Co-producers, Healthstyles

Digital Health Advocacy

Sarah Mendoza AoananThis guest post is written by Sarah Mendoza Aoanan a Health Advocacy Fellow at the Global Healthy Living Foundation.  She received her Masters in Health Advocacy from Sarah Lawrence College and is a Herman Biggs Health Policy Scholar.  A compassionate supporter of people living with chronic illness, Sarah is dedicated to reducing barriers to health care.

People who are diagnosed with at least one chronic medical condition are more likely to seek information online, use social media to understand peer patients’ reviews on drugs and treatments, and learn from other patients and patient-centered organizations about their personal health experiences and how to improve them.

On October 20, Global Healthy Living Foundation (GHLF) will host its third digital advocacy summit — Digital Health Advocacy in Washington, DC and online. Digital health social media experts will help advocates realize the full potential of social media in advancing their goals and strategies. Follow the proceedings on Twitter using hashtag #dhAdv

Through the power of social media, the Global Healthy Living Foundation (GHLF) has been able to achieve its mission: to improve the quality of life for people with chronic illness. It’s most popular website, Creaky Joints and it’s Facebook page is the most popular online arthritis community in the world. The value of social media lies in its ability to reach millions of people and connect diverse ethnic, socioeconomic, and geographically dispersed individuals and communities.  Social media platforms have allowed organizations like GHLF to educate and share information about public health and social welfare such as critical public safety information and offer support to its members living with disease.

There are moments, however, when social media does more harm than good.  Just this week, Facebook had to apologize to the LGBT community for its real-name policy, which deleted members such as drag queens and kings, and transgender people who could not provide their real first and last names.  By deleting accounts, Facebook took away the safe space and in some cases identities, of its members. With lots of backlash, Facebook pledged to work with community advocates to improve its policies.

Social media is an ever-evolving medium that can unite people with shared interests and passions, and mobilizes people to take action together.  Its capacity to improve peoples’ health should be far greater than its capacity to cause harm.

GHLF invites anyone who is interested to join us in person or online via the live web stream.  The summit is free and will offer best practices, examples of what not to repeat, ways to build and strengthen social networks, and avenues for finding success in online advocacy.  Please register at dhAdvocacy.org/registration.

 

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